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By Pamela Cruz with information from Manuel Ortiz. Peninsula 360 Press.
Developmental disabilities are a group of conditions caused by a deficit in learning, language, behavior, or physical areas. Approximately 1 in 6 children in the United States has one or more developmental disabilities or other developmental delays; one of the most commonly discussed is autism spectrum disorder (ASD), which, with appropriate treatment, can improve the quality of life for children with autism.
Manuel Ortiz interviewed Maribel Hernández Gómez of the Center for Excellence in Developmental Disabilities at the Mind Institute at UC Davis in the Península 360 Press mobile studio. She highlighted the importance of mothers and fathers being able to access information based on scientific evidence to support and help their children be diagnosed and treated appropriately.
But what is the definition of autism?
“By definition, it is a neurodevelopmental condition, and it is currently diagnosed at an average of four years of age, but there may be marks or it can be noticed from 12 or 18 months,” said the community outreach specialist for the Spanish-speaking community.
There is a long list of these signs, he said, but when an evaluation is done to make a diagnosis, it focuses on communication, such as the absence of verbal language, or its existence but not being functional.
Another part, she said, is stereotyping, repetitive behaviors "like when these children make lines with the carts, and instead of playing with the cart they play with the wheel of the cart, when we see these children who have difficulties with food, when our little ones only want to go out through the same door; in general they have rituals for doing certain activities."
In the case of food, he specified, these are those who, for example: have a favorite food and cannot eat anything else, foods of different colors cannot be mixed, or in general no food can be next to another, "these are behaviors that are seen, that are noticed, that are not functional and are impacting their development, impacting their coexistence, the social part."
Given this, what should be done if there is a suspicion that our children have autism spectrum disorder?
When there is a suspicion, Maribel Hernández stressed, it is necessary to go to the pediatrician, who should be the person who makes the referral to the Regional Centers in California, “a place where you can also call and ask for an evaluation.”
In addition, he explained, schools can also provide support in these types of situations by referring children to specialized care centers, regardless of whether they are over 3 years old.
“You go and ask for help at school and say: my child is 3 years old and is not talking; my child is 3 years old and has not stopped wearing diapers; my child is three years old and throws himself on the floor when he gets angry, there is no communication, he hits; when there are all these concerns you can call the Regional Center and call or go to your school and you can communicate with your doctor.”
Stigmas begin at home
For many, stigma and fear of what others will say can cause mothers and fathers to not seek professional help, due to feelings of guilt, said Maribel Hernandez, who has two children diagnosed with Autism Spectrum Disorder.
“Many of us parents feel guilty, but we did nothing to make this little boy have autism. It is part of life, like other difficult parts of our lives, but there is nothing we could have done differently to prevent this from happening,” she said.
She pointed out that stigmas only lead to children not seeking the appropriate help they need to improve their situation, which is not always ASD, but an adequate diagnosis is necessary to obtain the best treatment.
“As we know, the brain develops wonderfully between the ages of 0 and 6, which is why intervention is so important. If there are concerns, maybe it is not autism, maybe there is just a language delay and it is a good idea to go for this evaluation, so that the child can be given the support to develop language and catch up with his peers.”
However, for parents of a child with ASD, the diagnosis can generate grief, which is not always linked to the death of a loved one, as it entails loss, which can be of a job, of love, of health, and yes, also losing a "typical" child, the first stage of this grief being denial.
“This denial happens because it hurts us a lot, we don’t want our precious son to have difficulties, so that’s why we say: no, he’ll talk, my brother talked until he was 5 years old; all this will fix itself, and we create this alternate reality where nothing is happening, but in reality it is happening.
In light of this, he stressed, it is necessary to get to work and seek the necessary support and services.
California residents have special assistance, unlike in other states in the country, since there are Regional Centers, which support people with developmental disabilities from age 0 until the end of their lives.
Additionally, Medi-Cal also supports children with these types of needs, regardless of their immigration status.
Maribel Hernández recalled the importance of going to specialists and appropriate centers for care, since just listening to a neighbor or taking advice from social networks can only delay help and the child's recovery.
“Now, with all this communication and how easy it is to become famous and give recommendations, I think it is very delicate to be careful of those people who want to take advantage of our pain, of our desperation to cure our son, and offer us some treatments to cure autism that have no scientific evidence and we don’t know if they will work. Sometimes we have more faith in that information because people know how to sell themselves, unlike evidence-based practices. Be careful, if in addition to curing autism it cures other things and it is very expensive, they are possibly deceiving you and taking advantage of your need,” he warned.
Patience is important, and that is why the specialist urged not to take panaceas.
“Children grow up, they don’t stay little. It is very important that we work with them when they are little, when we can redirect them, when it is hard for us, maybe we can take them to the movies, go out to a restaurant, be in the park, but if now that they are little it is a lot of work, if we don’t work at this time when they are adults it will be a little more complicated,” she said.
Suggestions for parents of a child diagnosed with developmental delay or neurodevelopmental disability
- Designate a folder to organize your child's information: assessments, reports, communication log, meeting notes.
- Contact local agencies: Regional Center, School District, Health Care Provider, Family Resource Center (in the Sacramento Warmline area) http://www.wamlinefrc.oralespanol.html, PTI Parent Training and Information Center (DREDF for Northern CA) https://dredf.ora/educacion-especial/.
- Attend support groups, conferences, workshops, and community activities https://health.ucdavis.edu/mindinstitute/events/index.html.
- Learn about your rights and responsibilities in special education ~IEP (SERR DRC https://serr.disabilityrightsca.org/sp/)
- Review the Lanterman Developmental Disabilities Services Act IFSP/IPP https://rula.disabilityrightsca.org/es.
- Visit the CEDD MIND Institute website and trusted sites (.edu/.org/.gov) https://health.ucdavis.edu/mindinstitute/centers/cedd-spanish.html.
- You can contact the CEDD MIND Institute Resource Center, Spanish line at 916-703-0439 or 916-734-1812, where you are invited to be part of a community of parents and professionals committed to improving the lives of people with disabilities and their families.
- Be part of the research https://health.ucdavis.edu/mindinstitute/registry/index.html.
Stay informed, continue learning https://www.facebook.com/CEDDCENTROPARALAEXCELENCIAENDISCAPACIDADESDELDESAR/.
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